Friday Tidbits: My Three Daily Shots

Needles: I thoroughly hate them - I have a true phobia. I think that the Guy Upstairs has a very funny sense of humor because I need three shots daily. Or, perhaps, I lived a very strange sort of existence in a former life and my punishment is having to get so many shots in this lifetime.

People seem to be curious about medications our fellow sick ones take and I'm private about some things, yet share others.  A lot also has to do with how much I think others might want to hear, preferring not to bore people to death.  But it's Friday, I'm feeling cruddy with all that's going on, still with the nausea, recovering somewhat with the swelling and bloating, pain, you-know-the-drill, much of it still where I was last week.  I've had a few other problems that are getting to me but I'm still sitting on the fence as to whether anyone would want to hear about it or not.  Other things are driving me nuts: I'm trying to hold out and see if there is any rhyme or reason - hint: rashes and hives amongst other annoyances.

Hubs is out of town for a long weekend, I'm forced to give myself my own shots and so I finally decided I'd "go there" - that is, tell you about the three shots I dread so much that everyone but in the family but myself knows how to administer.  I should say that I'm so bad about needles that back in the day when the only way to get over a migraine - besides waiting it out - was a shot, my 13-years old daughter came to her dad and said, "it's about time you teach me how to give mom her migraine shot. You're not always around to do it, you know."  Or words to that effect.  That summer, bossy daughter and I were going to fly to Oxford and she wanted to make sure I was covered.  Have I mentioned lately that the girl's got guts?

Luckily, needles are not the only way to go in order to treat migraines any longer.  Those little pills are such a convenience!  I'm so bad that I prefer going through life with migraines than have a shot - or the occasional DHE-45 IV given over an extended period of time in the ER with hit-and-miss results.  See how ancient I am? It's as if I lived in the age before antibiotics were invented!  Not quite, but almost.

But the Guy Upstairs still has His joke with me on a daily basis with:

• Vitamin B-12  Yes, I could go with the pill form, even the sublingual form, but that didn't work for me.  Despite getting B-12 the way the rest of us get it, back in 1997 my test results showed that suddenly I was extremely deficient in B-12.  In fact, I was low despite the IV nutritionals I was getting weekly at the holistic clinic I went to over two hours away by car, each week for a year.  The funny thing - not haha but strange - is that it takes two years for your body to make up the deficiency. Therefore, though the tests may come back with your level of B-12 - registering in normal amounts - and though the blood tests may reassure you, guess what!  Your cellular level of B-12 may still be low.  I now get a daily shot of B-12 and do get tested periodically to make sure that my levels are in the normal range, not too high, not too low.

• Pitocin   I'm sure many out there with Chronic Fatigue and Immune Dysfunction Syndrome (CFS/ME), fibromyalgia and many other autoimmune illnesses have problems with vision changing day-to-day and even hour-to-hour.  But it's not a vision problem, per se.  Instead, it's the brain not able to interpret what the eyes see.  This makes sense to me (my case, that is) because of two factors. On my worst days, my vision is kaput. I can't get anything to focus right.  On my better days, my vision is not annoying, although unlike Goldilocks, it's never just right. 

Which leads me into a smooth transition. The second reason I get a daily pitocin shot is because "some" believe that it may be a pituitary problem. It's a bit much to go into today, so I'll address this in a future posting, soon.  It's a truly amazing thing that we've discovered, so it perhaps deserves its own post!  (Am I getting good at ya'll anticipating a post?  I'm tryin'!)

• HGH (Human Growth Hormone)  I think I've gone on and on about this, more than most ever want to hear.  These  HGH posts are found here (weight gain),  here (impact on fibromyalgia) and here (hormonal impact/levels).  But as I've mentioned once before, my rheumy is really worried that the HGH deficiencies he's seeing in his practice are almost epidemic.  (I'm adding the "almost," and underplaying his concern and alarm.)

 

And off we go into another weekend!  As always, I hope everyone's doing their very best, only better!  Wishing you a wonderful weekend.  Ciao and paka! 


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Friday Tidbits: DHEA and HGH

As a child I had normal human growth hormone...

In the past, I've described several tests that can help doctors, as well as patients with fibromyalgia and/or Chronic Fatigue Syndrome (CFIDS/ME/CFS), to better understand the medical problems that are all too common, yet may be overlooked.  Some tests, like the sed rate (Erythrocyte Sedimentation Rate), white blood cell count and thyroid hormone levels do not vary with age.  That is, a young adult and an octogenarian would be expected to have levels that fall within a certain range, regardless of age.  However, this isn't true for two very important hormones: DHEA and growth hormone (HGH).  

DHEA (mentioned before), also known as Dehyrdroepiandrosterone, is a natural hormone that is made by both men and women and is necessary for optimal body function.  It's made in the adrenal glands, which are glands that lay above each kidney.  If a person doesn't have enough DHEA, he/she is more prone to:

• infection, low energy
• decreased libido 
• muscle weakness 
• poor muscle tone. 

The highest levels occur, not surprisingly, when a person is between 20 and 30-years of age and the levels decrease as an individual ages.  A graph in the book, DHEA: A Practical Guide by Ray Sahelian, MD illustrates this very clearly. (Unfortunately, the book is out of print so why do I bring it up?  Because rheumatologists, endocrinologists and others who work with these hormones still love it!)  This is important because the DHEA level that is obtained for any given patient must be interpreted in the context of the sex and age of the patient.  

However, it's easy to misinterpret the DHEA level by referring to the normal range provided by the laboratory. The normal range encompasses the levels of DHEA from healthy individuals of all age groups.  For example, a forty-year-old woman should have a level of about 200 and an 80-year old woman should have a level of about 50.  Both values, i.e., 200 and 50, are in the normal range.  However, if a 40-year-old fibromyalgia and CFS sufferer has a level of 50, it may be in the normal range for the general population but certainly not the right level for the 40-year old.  This is an extremely important point as a patient may be incorrectly reassured that he/she does not have a DHEA problem when in fact the patient is dire need of DHEA supplementation. 

The same principal holds true for growth hormone.  This is a hormone that's made by the pituitary gland of the brain, typically during deep sleep.  (Ah! Therein lies the rub for the fibro and/or CFS patient: sleep deprivation!)  The highest levels are made by children.  Once they reach adult stature, they still need to produce this hormone, albeit in smaller quantities, in order for wound healing and normal metabolism to occur.  For an adult, the summary phrase for the role it plays might be "helps maintain tissues and organs throughout life."  Dr. Robert Bennett described growth hormone deficiency in fibromyalgia patients as early as 1992 in the journal, Arthritis and Rheumatism.  It is important to understand that a normal hormone secretion for a 40-year old is going to be a lot more than that of an 80-year old.  As in the above example, if a 40-year old has a level appropriate for an 80-year old, that patient has a REAL problem.

(The role of HGH level production has not been described in CFS/ME patients but many rheumatologists who deal with fibromayalgia patients also see HGH insufficiency in their CFS patients as well.  Mine certainly does.)

 Adult Growth Hormone deficiency can cause the metabolism to slow down, resulting in: 

• weight gain, particularly around the mid-section
• decreased stamina
• altered body composition (more fat, less lean muscle mass)
• muscle and bone growth (spine and disc erosion may occur)
• sugar and fat metabolism (slows down)
• possibly heart function
• many other unpleasant symptoms (including depression, anxiety, decreased sweating, thermoregulation, changes in memory - processing and attention included, social isolation)

Again, this deficiency may be overlooked if the test results are misinterpreted.  

Therefore, if you have fibro or CFS/ME then 

• have your DHEA level checked
• have your Growth Hormone level checked by getting a test for its byproduct known as IGF-1 -- insulin dependent growth factor-1, otherwise known as Somatomedin-C 
• make sure that the tests are interpreted correctly since both tests are dependent on the patient's age.

If deficiencies are identified and addressed, many symptoms will go away completely or become more manageable.  Believe it or not, DHEA deficiency or growth hormone deficiency are more common than thought and are eminently treatable. 

I'll address the reimbursement issues in a future post.

As always, hoping all are doing their best, only better.  Ciao and paka!


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Fibro, HGH and DHEA...

You mean you're STILL looking for what's going wrong?

I know I keep going on and on on about Human Growth Hormone "Deficiency" (I have trouble with the term but that will have to keep for another post).  You may very well be thinking, "here we go again," but there really is good reason to go on about HGH today!  Last night on twitter I happened to mention that blood work from the visit to the endocrinologist was slowly trickling in. Yawza!  My doctors and I are in a bit of a surprised state.

Fortunately, my thyroid tests are thus far all normal.  That is, the thyroid medication and dosage seem to be working a treat.  So it looks like THAT seems to be under control though to be perfectly honest with you, I personally have a problem with all thyroid testing and its accuracy.  (Another post, folks!)  But be that as it may, we need to look elsewhere for what the REAL problems may be and today we have two clues as to what may be causing me to feel as sick as I did back in 2001, if, that is, it's not the worst I've ever felt.  Period.

My doctor checked for a hormone called DHEA (Dehydroepiandrosterone).  This is not new territory for me. For those who aren't familiar with DHEA, this is a hormone that both men and women make and is released by the adrenal glands, located above each kidney.  This hormone is necessary for many bodily functions including resistance to infection, muscle toning and energy level.  In the past, I've actually been low in my DHEA level and have had to take supplements to get my levels where they should be. 

DHEA levels can actually fluctuate based on pain levels, nutrition, sleep and the presence of other diseases. Consequently, the levels should be taken (in the form of a blood test) periodically, some even advise every month or two.  (If we tested me every month or so for everything, I'd have no blood left, so we do so only about every year or so!)  Normally, DHEA levels decline with age - isn't that often the case?  Sigh!  In the past few years my DHEA levels have been pretty much spot on (hallelujah! Something that's right with moi!).  However, my most recent test shows that my level is about a third of what it should be.  (What luck!)  My doctor will be prescribing DHEA in pill form - again - to be taken once a day and we should be set on that front.  To tell you the truth, I've never felt much of a difference in taking the DHEA, but it makes the guys so happy that I just let them get their jollies with me when they can.  (Did that sound improper?  I assure you it wasn't meant to be anything but amusing!  I get my jollies where I can as well!)

However, the part that HAS intrigued me is that in taking my most recent blood work we checked out my HGH levels again, just for "fun," and there we were in for a surprise! (See previous links to HGH posts here, here, and here.)  

To be boringly accurate, one doesn't actually check for hormone levels but for by-product levels of IGF-1 (Insulin-dependent growth factor 1).  This chemical has a very long half-life so a random blood test will give the doctor a good idea of how much growth hormone has been released from the pituitary gland in the brain over the last few days.  As we age we make less and less growth hormone: this is normal.  However, as Bennett described in the literature beginning back in 1992, HGH levels in people with fibro are all too often low and in 1995 Bennett showed that growth hormone injections improved the quality of life for his fibro patients.  However, because adult growth hormone deficiency is thought to be rare, expensive and hard to obtain, doctors do not check levels of IGF-1.  Because they do not see cases of growth hormone deficiency the concept that it is rare in adults got solidified in physicians' minds, further complicating a convoluted history. (Understatement!)

OK, time to take a step back for a moment in order to understand the whole myth, "secrecy" and even legend of the whole HGH issue, though in very "Cliff Notes" style.  The whole issue became muddled when abuses began with the misuse of HGH.  In children, who indeed DO need HGH in enormous amounts in order to grow, etc, the hormone was suddenly abused by some doctors and parents who had children who did NOT have HGH deficiency but because they wanted their children to become better athletes and thus the whole system got out of whack.  Further complicating the system was when ADULTS wanted to look younger and abused the hormone for cosmetic reasons.  Do we even need to go into the abuses on behalf of adult athletes?  

The government tried to control the abuses of the hormone and imposed controls which the insurance companies took advantage of, thus making a cluster you-know-what.  When I was diagnosed with HGH deficiency in 1999 it took two YEARS for HGH to be approved on behalf of all agencies involved and we could not buy any for love or money, even though I was lying in the hospital dying with all of my organs shutting down when, finally, the HGH was shipped to us via courier.  It's still very difficult to get HGH (not available in a pharmacy but only each month, still via courier, after a call for a delivery time, date and place each and EVERY month! Talk about restrictions!).  HGH is still very difficult to obtain with lots of testing needed to "satisfy" all the powers-that-be, although much easier to obtain than back in 2001.  Now you have the back story in a nutshell, though trust me, a book could be written on this alone.

Back to today...

I just learned that my most recent IGF-1 level had dropped from a normal value about six months ago to a much lower level now.  This is quite unheard of.  We normally go to my endocrinologist to make sure that my IGF-1 level is not too high since as I age, we need to keep the level at the number that someone my age would need and NOT any higher.  Now here we are, stunned to find ourselves with a much lower number than what we ever could have imagined.

This is also surprising because my dose of HGH had not changed for many years, since 2001, in fact.  The last time my levels were taken was in September.  What could have happened to change a number so quickly or even to change it at all?

There are several possibilities that come to mind:

• Although my pneumonia was probably developing earlier, it wasn't diagnosed until October 11.  The pneumonia may have weakened me and made me more prone to develop a lower hormone level.
• At about the same time, I had my gall bladder and stones removed.  This is major surgery (as I found out the hard way!) and is a major stress on the body.
• The holidays certainly didn't help my general health.
• The remodeling and redecorating (which seems to be a permanent state of affairs here in this house) has most definitely not helped.
• We've gone from a family which has had embarrassingly great health (except for MOI - must give that caveat again!) to a family with embarrassingly BAD health with each family member undergoing major surgery in the last year and a half.  Talk about stress and worry!

At any rate, I include this info because again, I really want people out there to realize that DHEA and HGH levels are so important and frequently problematic in fibro.  Please do yourself a favor and talk to your doctors about this if you have unexplained fatigue, low stamina and muscle weakness.  Also, a deficiency of these hormones can make you flabby (as I can attest!) and unable to lose weight, no matter how much you try (again, I can attest!  Sadly!).  Again, previous posts go into other aspects of lack of HGH (see search box if need be).

I don't know that we've found my Red October in the Hunt for it (see previous posts on that) but at least we have one small explanation for my recent deterioration. We just need to see if this is yet another red herring or the real deal.

As always, hoping that everyone's feeling their best, only better.  Ciao and paka.



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3 Fibromyalgia Tips (A New Series?)

Four-month-old Irene wants to have a discussion about saying "no"!

I thought I'd start a series dealing with fibromyalgia tips, very short ones.  OK, I know.  You've heard "short" from me exactly HOW many times?  However, if I can pull this off, it would be no more than 3 tips with each fibro tip-dedicated post.

These would be "things" that I've had experience with personally with my severe fibromyalgia and/or "things" my rheumatologist and GP have found to be of help with their own fibromyalgia patient, be it accompanied or caused by CFIDS/ME/CFS, lupus, rheumatoid arthritis or the scores of other problems that can cause fibro.  Some tips will seem obvious whereas some might be a complete surprise - or so I hope. Now I just need to come up with a good title for the "series," in addition to those ideas. (Irene bangs head against headboard today!)

The usual caveat comes in as it does for most blogs dealing with fibro, and indeed any illness.  That is, I'm most certainly not a doctor, though I AM a veteran of the fibro war from well before fibromyalgia was even described.  Furthermore, we have all found ourselves in this rotten situation for all too many different reasons and we're all made differently, so what may work beautifully for one person, may be a complete non-starter or non-issue for another.  So with those thoughts in mind, I begin this new "feature":

1. HGH (Human Growth Hormone):
More research and positive results (the "bad news" kind) in regards to the low level of adult growth hormone in fibromyalgia are seen every day and in staggering/surprising numbers.  Two clues to HGH insufficiency are a "big" belly and slight scratches or tiny kitchen burns which would normally not show up at all, suddenly not healing.  If this is happening to you and no matter what you do to try to remedy the situation, nothing works,  and you suspect a problem with your HGH levels, please discuss this with your doctor. Keep in mind that this is one area which most doctors are not well versed in: it's pretty specific or specialized knowledge, so you may need a bit of documentation/homework to present to your doctor (with as much humility as possible) if you decide this area needs investigation.

2. Disability stress: 
If you're getting stressed out because of bureaucratic run-arounds and nothing seems to be helping in resolving your disability paperwork to come through, consider notifying your local representative.  I realize that this may be more effective in areas not heavily populated - getting to your local representative in places such as Chicago or Los Angeles gives you some mighty stiff competition from so many varied areas of concern. But really, you'd be surprised at how quickly some things can be processed if you go this route if you've been banging your head against the proverbial wall, with no results, paperwork always stuck in some limbo.  Better yet, a one-on-one talk with your state congressman is even more effective than a letter or phone call if you're able to be "out and about."  I'd also venture to say that getting to know your local representative in the first place is not a bad idea.  You just never know when that personal connection might come in handy.

3. Learning to say NO!
Just because you have ALL this time on your hands - which is how the world perceives those with "invisible" illnesses - don't get bullied into doing tons of favors for other people.  Listen up, please: tell those who are insensitive enough to ask for health-draining favors that your doctor forbids it (whatever the "favor" is) and put the blame on him. And this would, most likely, not be even close to a "white lie."  (I have a real bugaboo about any sorts of lies.)  Your doctor, if he's worth his salt, most likely HAS spoken to you about your limitations, talked about "health credits," pacing yourself, avoiding needless stress, the need for rest and so forth.  So don't be embarrassed to evoke doctor's orders when in a bind!  I know that it's hard to go this route because I rarely did so myself - and look where it got me!  Yet WHY is it that we're hesitant about being honest?  Furthermore, that's what you're paying your doctor for: to be your health advocate.  Take advantage of what you're "getting," ie, great advice!

What do you think about these tips or this fibro tips concept?  Let me know ... if the comments box works for you, that is!

Happy Thanksgiving to those celebrating my favorite holiday.   As always, I hope that everyone is feeling their best, only so very much better!  Ciao and paka!


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Fibromyalgia: Is That All There Is?

"The Three Graces" illustration that appeared in the original fibromyalgia criteria study (1990) with tender points superimposed.

I've been asked (more than once) if there is a blood test that will determine if one has fibromyalgia (also known as Fibromyalgia Syndrome (FMS), nasty and degrading little term that's used, "syndrome," no?)  The short (and sad) news is that no, there is no blood tests that will identify fibromyalgia.  However...

...there are certain blood tests that should be run for three reasons: first, to exclude any conditions that may mimic fibromyalgia; second, to exclude if comorbidities exist - that is, to see if other conditions in addition to the fibromyalgia exist; and third, to factor in what would help establish how and if fibromyalgia symptoms can be lessened.

Before we get into the above reasons, I would like to emphasize that in most cases fibromyalgia is relatively easily established by a rheumatolgist or pain specialist knowledgeable in fibromyalgia.  Not all rheumatologists, pain specialists, or even neurologists, however, are equal in identifying fibro and indeed some of the specialists out there who claim to be well-acquainted with fibro are indeed not specialists in the field.  Unfortunately, I know this first-hand as a "professional patient."  (Ha! But sadly also true.)

But getting to my list:

• Fibromyalgia can occur on its own, yes.  For the most part, however, it's a sign that there is something else going on and that cause needs to be checked out. 

• As they say in the medical field, your usual doc starts looking for horses before the "zebras bit" but when it comes to fibro, a medical history is absolutely necessary as it may point out what would normally be viewed as zebras in most any other medical field.  In other words, it's incredible that when it comes to fibro the zebras are actually horses.  For example, adult growth hormone deficiency is often seen in fibromyalgia as Dr. Robert Bennett first described in 1992.   Car accidents can also be a cause of fibro, although often showing up years later. As is seen in my case, HGH insufficiency and numerous other factors have contributed to my fibromyalgia, including my CFIDS/CFS/ME.  However, lupus, osteoarthritis and even cancer - indeed almost any autoimmune disease and infectious disease - can cause fibro, as well as sleep disturbances (the latter described by Moldovsky and Smythe, 1974).

• There are other blood tests that can (and should) be run to see if it's a nutritional problem. A deficiency in magnesium (Red Blood Cell test should be run or the results will be inaccurate) and Vitamin B deficiencies are just two nutrients that can lead to problems with fibromyalgia. I was shocked, for example, to discover by two different doctors that I was indeed vitamin B deficient (trusting soul that I am NOT) and that it can take up to two years to overcome a vitamin B deficiency. 

I've found that after identifying and treating my many deficiencies, my fibromyalgia got much better, but it took a long time (well over two years for the HGH to also kick in) but I need to be monitored all the time because as I've said so often before, things just keep going wrong.

The American College of Rheumatology has published criteria to help the doctor make the diagnosis of fibro.  However, keep in mind that fibromyalgia is not a diagnosis of exclusion.  It used to be thought of as a "wastebasket" diagnosis, but no more! 

It also used to be thought of as a manifestation of depression. That notion has been disproved by many studies showing that depressed patients perform very differently on neuropsychological testing compared to fibromyalgia patients. The two profiles are simply very different.

Your doctor can use the published fibromyalgia criteria to establish whether or not you have fibromyalgia but blood testing can be very useful in the assessment and treatment of fibromyalgia patients.  However, looking into the various criteria (i.e., the evolution of the criteria over the years) and knowing some of the people involved, I must say that I do have a problem with some of the doctors who are in ivory towers and see few patients, who don't take good histories, as well as those who are afraid to touch their patients.  

But then I'm a bit picky, aren't I?

As always, I hope all are doing the best they can be, only better.  Ciao and paka!

Raphael's original "The Three Graces" with the tender points superimposed.

Another Reason Your Diet May Not Be Working?

The summer before my body stopped producing HGH.

Do you have Fibromyalgia and happen to also have a big belly?  Well today's post may help - or at the very least open your eyes to an avenue you may have not yet considered.  


Today I'd like to touch upon a health problem that is often seen in those who have CFIDS/ME and Fibromyalgia, but often WHY this problem is happening seem to escape explanation.  A rather large subject, I'd like to simply start an intro into this area and explore it more in the future, if necessary.  Sometimes I feel as if I'm opening a can of worms when I start to address a subject: today is certainly one of those days.


It's that of the big belly that is so often seen in patients with CFIDS/ME and Fibromyalgia.  The pituitary part of the brain is broken, to put it simply and succinctly.  I'm going to give you MY story and hope that you realize that this is just one person's experience. (Oh, how I hate all these disclaimers!  They make me sound so SERIOUS, whereas I do prefer laughing about the ridiculousness of my situation.)  On the other hand, aspects of this may help you reach some conclusions in your own cases.


I've been embarrassingly frank about the nature of my skin in past posts.  Yes, I get hives and all too often have all sorts of skin sensitivities, but like my mom and both her parents, I've been blessed in the wrinkles department and most especially in the healing-of-the-skin department.


I have numerous stories of scratches, scrapes, cuts and burns over the years which should have left scars but didn't.  Of course, I do have scars, but not as many as one would think, given the escapades of my tomboyish childhood.  


But to move this story along: one day, in particular, I was told by over-protective hubby that I wasn't to get out of bed that day because my face told him that it would be a day when I'd be vulnerable to accidents, falls, whatever.  As I've written before, my family can usually read how I feel much more accurately than I can.  To me, basically, each day is pretty cruddy, health-wise, and I have to learn to rely on others' observations.  On this particular morning, I'd evidently not learned that lesson.  Later that morning, feeling as if I just had to get out of my skin or I would go crazy, I decided to make myself a cup of tea.  Granted, I had to go downstairs for this, but I honestly thought I could handle it.  


As I opened the cabinet with all the "tea necessities," the little Cuisinart coffee grinder fell onto my head with the sharp blade slicing my forehead open, blood suddenly squirting everywhere.  I finally called hubby - and how much I didn't want to, you can only imagine, since I had been "warned" that bad things would befall me (groan: a pun) if I got out of bed - and he said he'd take me to the ER.  And thus an argument ensued. I was simply in no shape to go to the ER, no matter what.  By the time hubby arrived home and saw the mess, he was really insistent that I needed that area stitched, but I had to make him understand that I didn't care about the darn scar which would, undoubtedly, form smack in the middle of my forehead.  I simply could not move or have anyone touch me.  Hubby said he'd call an ambulance.  I told him that if the house were on fire, I literally would not be able to move.  I was just feeling that sick, weak, nauseated, and a myriad of symptoms that I can't even describe.


Hubby did the best he could with sticking on a few steristrips and a couple of days later, when I actually cared enough to think of how I'd look for the rest of my life, I looked at my arsenal of healing things and decided to try the lavender essential oil I had.   That summer, many people (doctors) shook their heads when they saw my "wound" (I mean it was right there on my face, hard to ignore!) and everyone said how stupid I was not to have gone to the ER and had a plastics guy fix it up.  This was said to my face at parties...I can't even imagine what was said behind my back!  Even then, the consensus went, I'd have a rather nasty scar.


Well, the joke was on them: my forehead healed wonderfully, thanks to my Bulyga and Lisovsky genes. There was not even a TRACE of a scar, which even by my own standards should been a mess.  Essential lavender oil started getting a reputation in some circles around town, as it rightfully should have.


So, imagine how surprised I was a few years later when each time I turned around I'd either burn myself taking Christmas cookies out of the oven, scratch myself moving a piece of furniture away from a certain spot in order to vacuum, or cut myself doing some silly bit of prep work in the kitchen.  Suddenly scars were forming that simply wouldn't go away.  More than one friend asked why the heck wasn't I using that "voodoo" stuff I'd used in the past.  When I realized it was the lavender oil they were talking about, I didn't know what to say.  They were right: why WASN'T the lavender working?


But the incident that really hit it home for me was the one in the garden.  I was putting in annuals, a very simple job even I could handle.  After the flowers were all in, it was such a great feeling.  The garden was going to look pretty good this year, I felt.  A couple of days later, I noticed a scraped area on the top of my foot, the area above the arch.  I looked and couldn't figure out what the heck was going on and was puzzled. That area had been a bit red after gardening, but it shouldn't have scabbed over...it should simply have disappeared.  It was a result of my kneeing down at times and the grass rubbing against my foot as I scooted along with those annuals.


Because the area wouldn't heal AT ALL, I pointed it out to my doctor a few weeks later during my monthly visit.  He didn't think much of it at the time but I wasn't letting it go.  I had to defend my ancestors' genes, after all.  Much was at stake!  I reminded my GP how the lavender had helped during that unfortunate forehead incident and he more or less did see that it was an unusual scenario for me but still thought I was a bit "over concerned."  The following month, my foot looked no better.   Now, I really wanted answers. 


More cuts, burns, scratches occurred - naturally, since I'm not the most "stable" person in the world.  Hubby likes to say I've fallen in all the great cities of Europe and it's true.  We can now even add Australia to the continent count.  Back then, I was horrified to see what the heck was happening to my skin and was getting royally upset.  


FINALLY, the time came to have blood work done, a relatively regular occurrence since there are certain meds that I'm on which can have nasty side-effects and also because we always find some sorts of goodies to address.  My HGH level was taken because I had suddenly started exhibiting a huge belly. Pregnant I was not: the emergency hysterectomy performed fifteen years before insured that. 


Well, lo and behold: my Human Growth Hormone (HGH) byproduct (IGF-1) was at the level of a 98-year old woman, whereas I was only in my late 40's.  Essentially, I was dying as organs became weaker, including my heart, my lungs, and so forth.


Yes, I'd become so weak that I was now completely bedridden.  Another test was run, and yes siree, there was no mistake.  My body had basically stopped producing HGH.  I had to be taken to Pittsburgh to a specific hospital to have "the gold standard" test done on me: the arginine test. If you fell asleep when the IV arginine hit your system, that suggested that you had no Human Growth Hormone being made by your body. I, the insomniac whose insomnia is so severe that it's actually been labeled by one neurologist as being "malignant," fell asleep the second that arginine hit my system and proceeded to sleep it off for the next few days. What bliss!  Don't I wish I had access to some arginine most of my life?


It took almost two years from the day we realized that I had an HGH problem to the day I finally started taking the HGH.   My hubby would call the insurance company, the government, the company that made the HGH and would beg to pay for it himself until the insurance company could get its act together for me to start with my daily shots but was refused each way he turned, as I got progressively worse and even ended up in the hospital.  And the scary part was that each day we were all afraid that I would soon be dead.  My organs were barely making it.  I was now at about the "age" of an 109-year old woman.  There were many long and funny stories around this period of my life which can be addressed at some other time, but only funny now so many years later when time has taken away the sting and we all know the ending.  One "cute" story: having to be carried out of the auditorium as my daughter's NYU class came in for their graduation.  All I kept thinking was, "thank God this is not her wedding!"


Eventually I was given the OK by all agencies involved.  But then the spy vs. spy scenario started.  You see, HGH is not something that you can simply pick up at your local CVS pharmacy.  No, an APPOINTMENT with a courier is made each month for the delivery and it must also be confirmed each month as to time and place. I love envisioning my hubby behind some dumpster making the illicit trade-off of the refrigerated HGH.


In the spirit of shortness, since I really do want to make my posts much shorter, I'll just make a few points.


First, it took two years for my body to recover to the point where the proper amount of HGH was reflected in my body for my age group.  They were an extremely rough two years, to put it mildly.


Second, I was extremely lucky.  My blood turns cold when I  realize that HGH was approved for use in adults only two years before we realized that I'd need HGH.  Had my body stopped producing it just a few years earlier, I'm afraid I'd have been dead.


Third, I suffered much irreparable damage.  Two discs totally dissolved and the bottom of my spine is gone also, among other "goodies."  My cholesterol count is really off and because I can't get it under control, I've given up.  It doesn't seem to matter what I eat: in fact, when I adhered to a heart smart diet, my cholesterol went up, when I ate whatever I felt like eating, it went down, though still at a totally unacceptable level by anyone's standards.


Four, I must see an endocrinologist about this and not all endocrinologists are built the same, evidently. That is, not all endocrinologists are "inclined" towards prescribing patients HGH.  Don't ask why since I've yet to figure out what THAT's all about.  The tests are there to show that I clearly need it.  Why only some endocrinologists can or will prescribe is an issue I'll never be privy enough to answer.  Worries of governmental agencies coming in and auditing the doctor?  I have no idea.  It's an extremely controlled protocol and has very rigid criteria. I live in fear of what happens to me as a patient when the very senior endocrinologist I go to finally DOES retire.  He's only working because he has so many patients who are dependent on him.  His is not an easy life when half his patients are brittle diabetics who, of course, often need to make middle of the night emergency calls.


Five: What is the insurance max in my case?  The medicines I take are costing us a bundle, even with insurance.  Add in the HGH and it's really a huge cost.  What IS my cap?  


Six: where the heck is this stuff coming from?  I don't even want to know and have purposely stayed away from all in regards to this part of my care.  I literally cannot live without the HGH and I don't want to know what problems may lie ahead of me because of my having to get daily injections.  Yes, close monitoring is done to make sure that I am getting only the amount that occurs in a woman my age, but there are always complications to everything a patient takes, and I'm sure that this is even more so in a case such as mine, given the bucket load of problems I already have.


And finally, what scares the crud out of me?  That for some "funny" reason, arginine, the amino acid which they inject into you for the "gold standard test" to establish if you are severely HGH deficient, is suddenly, mysteriously disappearing!  


To end the story (and hopefully I'll still be around, the pharma's not sending anyone out to bump me off because my mouth is too big) -  I don't heal as well as I used to before I ran out of my own ability to make HGH.  I'm alive, and yes, I realize I'm older, but really, I know where I should be and I'm not there.

I also worry about the people out there with growth hormone insufficiencies.   I so hate that word, "insufficiencies," since if you're making the hormone at all, you are then not ok'd for the manufactured hormones and your goose, it could be said, has been cooked.


If you have a belly that makes you wonder how you could possibly be pregnant or if you suddenly start getting scars from incidents that you normally wouldn't scar from, check into your HGH level. 

But I'm glad to report that despite all, including my son very inadvertently jinxing me by calling me "the weird mom with no wrinkles," I have not disgraced those ancestors of mine and that THAT part of me is doing OK: the Bulyga's and the Lisovsky's should be happy I still have so few wrinkles!  (Knock on wood and a tphoo! tphoo! tphoo!)